Australian patient Danielle Tindle, 36, was diagnosed with a neuroendocrine carcinoma, a decade after surviving Hodgkin’s lymphoma. At the time of the first diagnosis, all conventional treatments were ineffective and what saved her life was her own father’s groundbreaking stem-cell research. Ever since, Danielle Tindle is dedicated to improve cancer care. Now she is facing a new and rare type of cancer while fighting bureaucracies that make her pay exorbitant prices to be treated.
To treat neuroendocrine carcinoma, Tindle needs immunotherapy sessions every two weeks that cost her about $5,000 for each session. However, the same drugs are available for $6.20 for patients covered by Australia’s Pharmaceutical Benefits Scheme (PBS). The criteria for the medicines subsidized by the Australian government are based on the type of cancer, which makes some cancer patients pay minimal costs and others pay for the entire cost of the treatment.
Tindle cannot understand why she has to pay this price for her life-saving treatment and is a vocal opponent of the rule. “[A melanoma patient, for instance,] is receiving it at a PBS subsidized rate, while I’m paying thousands of dollars,” Tindle said to the Australian Story. “There’s no one that could look me in the eye, from any level of government, or even the drug companies, and say that’s a fair situation. Something needs to change.”
“There’s a lot of people out there who are very surprised when they get diagnosed with a rare cancer, that what they thought was a good, safe health system which provided drugs for people, just doesn’t,” explained Rare Cancers Australia Chief Executive Richard Vines.
“Nobody thinks it’s fair. It’s so frustrating. The [drugs] are sitting on the shelf, the government’s OK’d them for one type of cancer, and not for the other,” he said.
Ever since Tindle survived Hodgkin’s lymphoma, she has dedicated her life to help improve cancer care. When she first fought cancer, she received standard treatments, but they did not help her lymphoma.
Her father, Dr. Robert Tindle, a retired professor of immunology, and Dr. Peter MacCallum in Melbourne worked together to understand her disease and help treat her.
The two investigators sent tissues from her tumor to the United States for genomic profiling, and the results revealed that it was very similar to small-cell carcinoma. After that, they started working on a stem cell treatment that ended up saving her life.
She was in remission for a decade and worked on her Ph.D. titled “Creating Meaning: The cancer survivorship experiences of young adults in Australia, England, and the United States,” when she was diagnosed with cancer for the second time.
“It wasn’t a relapse of her Hodgkin’s lymphoma, it was a new tumor altogether — a neuroendocrine carcinoma,” said Danielle’s father. “That she’s got it is almost entirely the result of the draconian treatment she had 12 years ago for Hodgkin’s lymphoma.”
While Dr. Tindle believes that the first treatment caused the neuroendocrine carcinoma, that theory cannot be confirmed.
Now, Danielle Tindle continues her fight against cancer and the bureaucracies that won’t subsidize her treatment. She has spent nearly $80,000 in immunotherapy since July 2015 and cannot help but feel frustrated.
“This is happening to a number of people around Australia,” Tindle said. “I can’t help thinking I have given so much; a lot of my advocacy work has been pro bono work, but when I need help, I feel like the system is failing me.”
To help with her treatment costs, Danielle Tindle created a GoFundMe campaign:
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